April is almost here and I couldn’t be more excited! Soon I will be at the Boston Marathon cheering on my running partner, Lisa V! She’s there today participating in the Charity Run. Many of you probably don’t know that…
Blog Archives
Those Silent Tears #9
March 18, 2015-It’s hard to imagine that in just a few short weeks, it will be the four-year anniversary of being diagnosed and the nine-year anniversary of my entire world being rocked. It had been a five-year span of multiple diagnoses and toxic…
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Howdy from Austin!
I’m Melissa, the resident blogger for the Emerson Austin team. This is the first time that our company has participated with Genzyme and New England Controls in Running for Rare Diseases. Our team is made up of 11 runners (well…
Thank you and Happy St. Patty’s Day
Hi, I want to wish you all a Happy St. Patty’s Day and thank you all for Running for Rare Disease, especially my running partner Lisa V! It took six years before anyone knew what was wrong with me.…
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Garrett the Grand – Batten Fighter
Hello Runners and Patient Partners, My name is Nancy Coyne and my son is Garrett Coyne, age 4. Garrett is paired with Zeb Jones who is running the Boston Marathon! So who do I talk about first, Garrett or Zeb?! Well…
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Our “normal”
Being Rare……. Sometimes we look like everyone else, happy, busy people, socializing with friends, and helping others. Then sometimes we don’t. We wear masks to protect ourselves from others scent (strong odors/perfume). Wearing gloves at the playground. Stopping any activity…
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Rare Disease Day at NIH
 Hi my name is Noah Maria Victoria and I am the patient part of Running for Rare Diseases. My wonderful partner is Jon Rayla !!!My parents and I recently participated in Rare Disease Day at NIH . We decided…
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Running like a hamster
This is my first blog post, so please bear with me. I am so excited and proud to be running the Boston Marathon this year for the National Organization for Rare Disorders (NORD). The picture above is my view as…
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